Passages in Caregiving: Turning Chaos Into Confidence

everyone's experience will be different in so many respects. I've been a caregiver for my wife for over 30 years, and many of Sheehy's suggestions and resources were helpful (or would have been helpful) to both of us over the years. And, it's always interesting to learn about other people's experiences -- sometimes they are extraordinarily helpful. One example: about 27 years ago I saw a public television documentary about a young couple with a small child, the husband with an incurable form of cancer and with a life expectancy in months. The young wife was poorly educated but very articulate: she worried about how well she was able to care for her husband, whether she was caring for her child properly, what she would do once her husband was gone to care for herself and her child. On the purely human level, she confessed that she wished her husband were dead -- her life and her child's life would be much better, and neither of them were able to do anyting really important for their husband and father. A few moments later she was very angry at herself for her betrayal of her husband, and guilty, wondering if she was an evil person in the sight of God. The human agony she expressed was heart breaking -- and instructive for me. Many times over the past several years I've worried whether I've done all I could, or as well as I could, to help my wife. Every time, though, that I started to feel guilty about those failures, I remembered that young woman and the extra self induced agony she was adding to her own life. She's inspired me many times to simply acknowledge that I could have done something better ... inspired me to resolve to do better in the future ... and simply prevent myself from feeling the guilt attendant to my failings. Sheehy's honesty portrayal of her own experiences, and her excellent researches on how and why people react in different ways in a caregiving experience can provide the same help to others in her (and my) situation. At the same time, it is worth mentioning that Sheehy approaches caregiving from the perspective of a wife caring for a husband. Experience shows that husbands are generally less able to handle the responsibilities. A recent study (citation in the first Comment) showed that women with serious diseases were seven times as likely to be divorced as men with the same condition. The study was the subject of an intense discussion on the Well column on "The New York Times" website, with a great deal of male bashing in evidence -- "how pathetic is that?", "men are evil", "Let's face it: women are superior creatures - caring, sympathetic, giving, self-sacrificing. Men are selfish pigs." etc. etc. It's unclear to me whether men are less able to cope with the challenges or whether the challenges are actually harder for men than for women (in my case, for example, I clearly lack a nurturing personality). It may be instructive that Sheehy does not address the changes in sexual roles as the result of a major illne

When Gail Sheehy got "The Call" she never dreamed she's spend the next seventeen years as a caregiver, fighting for the life of her husband who refused to give up. Inspired by her own journey as a caregiver her book "Passages in Caregiving: Turning Chaos into Confidence" identifies eight crucial stages of caregiving: shock and mobilization, the new normal, boomerang, playing God, I can't do it anymore, coming back, the in-between stage and the long good-bye. Sheehy helps us navigate our way through the patchwork of care alternatives, insurance regulations, medicare rules and conflicting advice. Providing advice and guidance she answers the most important questions to consider: Does your insurance and/or medicaid cover home care? Do you use palliative care or hospice? What is Palliative Care? Do you need an Advocate, Geriatric Care Manager, Home Health Aide, Nurse, Elder-Care Attorney, Research Guide or Medical Quarterback? For example to be eligible for a Medicaid-approved home care agency or Home Care in most states a patient can have only $2,000 per month of "countable assets." This does not include the family home while it is occupied by the patient, spouse or a minor. Most states will deny Medicaid if the patient transferred their assets to a relative in the last five years. She expressed concern about our current medical system where the hospital makes more money releasing and readmitting patients. The federal government and private insurance companies pay a lump sum for each hospital admission based on the patient's diagnosis. Insurance companies pay the hospital a predetermined set rate for a fixed number of days instead of paying to keep the patient until they get better. When patients are released earlier the hospital makes half again as much money. If the patient is held over the hospital will loose money as it will only be paid the predetermined set rate. Patients are given more and more high-tech tests, regardless of the benefit and being discharged quicker and often sicker. This explains why patients with frequent hospital readmissions in the last two years of life swallow up over 70 percent of the Medicaid budget. Also why when you call a doctor about a chronically ill person's medical problem the doctor is primed to tell you to take the patient to the emergency room for "reevaluation." Financial incentives drive hospital behavior. Doctors are often caught in the middle between the protesting family and the hospital's business office. Sheehy gives strategies for reliving caregiver stress, setting boundaries, avoiding codependency, protecting yourself from patient backlash, holding on to your job, pulling close to friends and seeking out other caregivers and support groups. She says the average family caregiver in the United States is a forty-eight year old career woman. The caregiver's role lasts an average of five years. I highly recommend Sheehy's moving account of her own journey and her well written and researched eas

Gail Sheehy brings to light an issue that many face, not only caregiving for an ill loved one but she also addresses challenges that are common to many baby boomers who after taking care of their kids and have emptied the nest, need to care for aging parents. That stresses the importance of talking about it and finding new ways to face these challenges. There are not real choices when it comes to care for seniors. The current options are either fragmented and basic home care or institutionalized living, I wonder about what happened to the concept of aging in place? The 2008 AARP survey stated that 89% of Americans do not want to leave their homes when they age. Most of these people will be live alone and receive support from a variety of health and community-based providers, family caregivers. How will the long-term care system provide care to a growing number of seniors living in increasingly scattered locations? And more importantly, how can that system continue to provide quality care in the face of workforce shortages, rising care costs and decreasing resources? Given my personal experience of caring for my father, who already passed, and now for my mother and as a professional in the filed, I have lived and breathed this issue. I believe the aging process is a challenging yet rewarding period in the life, and it is important to provide elders with a choice and provides peace of mind to family members. Thank to Gail Sheehy for bringing this important topic to the forefront for discussion. Her pioneer work as a family caregiver supports all what we need to do to meet the multilayered needs of the seniors in the 21st Century. Doris Bersing, PhD Living Well Assisted Living at Home, Inc President

I read the entire book in one sitting before interviewing Gail for a Today's Caregiver magazine cover interview this year. I spent much of the time nodding in agreement. It is a joy to see how Gail turns the chaos of caregiving into organization and confidence. My advice to family caregivers and those who will become family caregivers (which is, of course, most of us) is to read this book as soon as possible. There is no single path for any caregiver to follow. As the saying goes, "Once you've seen one caregiving situation, you've seen one caregiving situation." But there are signs and "turnings" along the way of which we need to be cognizant. As Gail shows in Passages in Caregiving, the more we understand, the more we realize that we are not alone as we care for our loved ones; and the more we care for ourselves, the better care we can deliver to our loved ones.

Gail Sheehy helped me understand the first big crisis of my adult life when she published Passages in 1976. Now she is addressing my most recent crisis in Passages in Caregiving. She is extending a lifeline to all caregivers of aging parents who feel alone, out of control and maybe a little crazy. Gail is telling us all the changes we are going through are normal, and that we are not alone. For more, see my post Gail Sheehy's Newest Book Offers Comfort for Caregivers at [...]